Maddie’s Walk for Epilepsy

Maddie is a very strong, courageous and outgoing 9 year old.
She has gone through so much in those 9 years. Maddie was 13
months old when she had her first seizure. At 22 months she
started anti seizure medications. Maddie started her care in
Peoria with neurology and then transferred care to Barnes
Jewish Children’s hospital in St. Louis. In the years since
diagnosis she has had hundreds of seizures and has been on 9 different anti seizure
medications. She has had numerous EEG’s (electroencephalogram) and MRI’s. In May of
2020 she was diagnosed with Doose Syndrome or Myoclonic astatic epilepsy. This form
of epilepsy can have up to 5 types of seizures. That she does. In October 2020 she had a
VNS (Vagus Nerve Stimulation) implanted in hopes to help with her seizures. In February
2021 she had a G tube placed so she could take her medications due to the frequency of
her seizures. She has a helmet to wear at school to protect her head when she has a
seizure. She has been life-flighted to Barnes on multiple occasions due to her seizures.
In October of 2023 she was life-flighted from Bloomington to Barnes in liver failure. She
spent 4 days in the ICU and came home a fighter.
With everything that she has gone through, Maddie would like to give back to an
organization that has done so much to help her live a normal life. We are holding a walk
in honor of Maddie and all of her accomplishments. All proceeds will go to The Epilepsy
Foundation in Maddie’s name.
We will be holding the walk on August 10th at White Oak Park. This will be a 3 mile walk
around the lake. We are so excited to help such an amazing organization. They do so
much for families with epilepsy. They help lead the fight to overcome the challenges of
living with epilepsy and accelerate therapies to stop seizures, find cures and save lives.
We will be walking as a community to gather and gain strength from each other, share
stories and inform those of the reasons why it is important to be aware of epilepsy.